Waiting

The wait is the worst.  Even with all the weakness in my body, I am a coiled spring.  I feel like a linebacker anticipating the first snap of the Super Bowl, except that I would be on my way to the emergency room- or morgue- within moments after the hike.  Sports analogies do not suit me well.

I have been waiting for so long, operating in a world absent hope that life can improve, that  illness will at least be held at bay.    Hope is new and oh, so fragile.    I entertain thinking life will be better, only to react, demanding of myself, are you crazy?  What are you thing?  Or smoking?

I learned a lot about clinical trials in my years on the advisory council of the Harvard NeuroDiscovery Center.  This is different because I will be a patient/participant rather than an impartial observer.  I had no dog in the fight, once. The dog has become a laboratory rat now, and our identities have merged.

This is short.  There is not a lot to say.  Millions of stem cells will be infused into my spine soon.  It only takes one egg, one sperm, to create a pregnancy.  How many stem cells are needed to repair a lesion?  Will the cells go to the damaged areas on my spine or stop at the bowling alley for a quick game and a few beets?

I am not a scientist.  What do I know?  Animal models suggest some positive results, but until live humans produce the same, nothing will happen.  So I am straining to start, scared to fail.   No amount of conjecture satisfies.  Show me something.

This is a grand experiment.  I am fortunate to be involved.  Whatever the result, I will be grateful for the opportunity.  Waiting is part of the process.  I know that.  The chronically impatient are not well suited to take the field in this contest.  I am one of those types.  Please do not tell the doctor.  He seems to think I am just going with the flow.

Actually, I doubt he thinks that.

17 Responses to Waiting

  1. Lori March 1, 2014 at 1:03 pm #

    Hang in there Richard – you’ve made it this far, it will happen soon!!!

    • Richard M. Cohen March 1, 2014 at 3:54 pm #

      Thanks.

      Best, R.

  2. Jeff March 1, 2014 at 1:20 pm #

    Richard,

    While none of us can truly know what you are going through, know that there are many of us who are waiting right there with you. It is tough, but just knowing that we are moving forward is reassuring. I am reminded of Teddy Roosevelt’s famous quote:

    “In any moment of decision, the best thing you can do is the right thing, the next best thing is the wrong thing, and the worst thing you can do is nothing.”

    You are certainly doing something and we all appreciate you being our surrogate and sharing with us.

    • Richard M. Cohen March 1, 2014 at 1:57 pm #

      Jeff-

      Great quote.

      We will get there, I think.

      Best,
      R.

  3. Brynn Sarff March 1, 2014 at 2:55 pm #

    We are all wishing you the best! My MS has taught me Patience that I never wanted, or expected to learn. I have such a good feeling about this for you! Will your Doctor allow you to give updates, or will he require that you wait for his benchmarks? Anxious in Spokane….

    • Richard M. Cohen March 1, 2014 at 4:01 pm #

      Brynn-

      I am going to keep writing, though any changew will come slowly. I will be open about everything, even the possibility that nothing changes. Who knows what to expect?

      Spokane, huh? My son, Gabe, is a reporter for KHQ. We have been out there a couple of times. We enjoyed it.

      Best,
      R.

  4. Jim March 1, 2014 at 2:56 pm #

    Waiting – immediately brings to mind the eminent Vultures on a branch with the accompanying caption “patience my ass, I’m going to kill something”
    Oh, and good news that rats have shown positive results. I’ve been compared to a rat on numerous occasions.
    I agree that we’ll eventually figure out how to assist our exceptional immune system to overcome this fiend of an ailment.

    • Richard M. Cohen March 1, 2014 at 4:03 pm #

      Jim-

      Agreed.

      Best,
      R.

      • Kate Aquilino March 2, 2014 at 9:33 am #

        The Power of Patience by MJ Ryan. Virtues don’t come easy and I’m impatient, too. The book is a winner. Mine, too. Muddling Through MS – 40 years doing it my way. I find passion is the way around impatience. Kate

  5. Nan-Beth March 1, 2014 at 10:25 pm #

    Hi Richard

    I was dx’d in 2001 and have known about you because of your wonderful wife, Meredith. Dr. Sadiq is my cousin’s dr. & he loves him. Of course he thinks he’s the best.
    Are you doing stem cells without chemo or is this the same as HSCT? I will be following your progress and hope it works well for you. It gives me hope. What kind of ms do you have. I have rrms but I think it’s turning into spms.

    Good luck
    Nan-Beth

    • Richard M. Cohen March 2, 2014 at 10:11 am #

      Beth-

      I have SPMS. I arrived there decades ago. No chemo for me. I have been down that road.

      This is an adventure.

      Best,
      R.

  6. Terri McMillen March 2, 2014 at 9:57 pm #

    Richard,
    Does Meredith blog or write about being the partner of someone with a chronic illness? I enjoy your blog very much but would so love to read how she has drawn strength through your illness. My husband is off to Panama next week for stem cell …fingers crossed!

    • Richard M. Cohen March 3, 2014 at 7:57 am #

      Terri-

      Wish your husband luck.

      Meredith is hugely supportive but tends to go elsewhere on her blog. Like to the freaking dog, probably to annoy me. That works.

      Best,
      R.

  7. Laurie March 3, 2014 at 1:18 am #

    Hi Richard,

    Sending positive energy and thoughts to you.

    Laurie

    • Richard M. Cohen March 3, 2014 at 7:58 am #

      Laurie-

      Thanks. I’ll take it.

      R.

  8. MB March 3, 2014 at 6:13 pm #

    You would think the clinic would call and say sorry for the delay but blah blah blah. I don’t think anyone but the patient feels any sense of urgency when it comes to moving on to the next step.

    Every Dr.s office should employ a person who respects that sense of urgency, give them access to when test results come in, and supply them with a cattle prod to keep the ball rolling for the patients who are stuck in Limbo Land.

  9. Kathy Reagan Young March 10, 2014 at 3:52 pm #

    Richard –

    I’m so excited for you, for your family, for us all. I’m jumping out of my skin waiting for your results – I can’t imagine how you must be feeling. I wanted to thank you personally – and on behalf of others in the MS community. This is a brave and noble thing that you’re taking on – especially being so public about it all. I have always believed that stem cell research was the path to follow on the MS road. Thanks for being the trailblazer. FUMS.